A New Approach to Preemie Care
An innovative neonatal program puts parents on the front lines.
The Neonatal Intensive Care Unit (NICU) at Toronto’s Mount Sinai Hospital is a large, bunker-like room with a team of efficient nurses checking screens and answering phones behind a massive desk. The soundtrack is a low hum of muffled baby cries and whimpers amid beeping monitors. There are no windows, and the lights are set low; it’s impossible to have any sense of the time. For many families, this is where they spend the first few weeks and months nesting, bonding and caring for their newborn babies.
Charlie Goetz was born at 25 weeks on June 8, 2014-so premature that his parents, Kelly and Jim Goetz, hadn’t settled on a name yet. Kelly, then 39, had had a fairly uneventful pregnancy. She was barely showing when her water broke and she was admitted to Mount Sinai for monitoring. She went into labour naturally 60 hours later.
“It was still so early,” says Kelly. “We had friends we hadn’t even told we were expecting yet. We had to send out a note: ‘This is an embarrassing email. Kelly’s expecting… and, by the way, we have a son!’ I went from not really even feeling pregnant to having a baby in the NICU.”
Charlie weighed just over a pound and a half at birth (about 790 grams). He was too little to breastfeed or take a bottle, and he needed support to breathe because his lungs hadn’t developed fully. Shortly after his first teeny-tiny cry, he was admitted to the NICU. There, he slept in a transparent Isolette, adjacent to the machines that monitored his respiratory rate, his heartbeat and the saturation of oxygen in his blood. His space was furnished with books and trinkets and a bright, graphic-patterned blanket-perfect for stimulating a still-developing brain. A cheerful, sticker-decorated sign spelled out his name, and after he started to put on weight, a certificate on the wall welcomed him into the one-kilo club. For months he was fed by a tube threaded through his nose or mouth-one of the many snaking wires that can make cuddling a preemie challenging.
Happily, just like full-term babies, Charlie and the other NICU infants at Mount Sinai get cuddled for hours on end by their moms and dads. Kelly, on leave from her job as a competition law investigator, is stationed by Charlie’s bed at least eight hours a day. Her husband, Jim, is there for an additional three hours or more each evening. They also change
his diapers, take his temperature and note how he’s doing at any given moment, which they report back to his care team.
This is because Charlie is part of a promising new medical model that gives parents a hands-on role in caring for babies delivered before 33 weeks of gestation. In Family Integrated Care (FIC, or as many participants refer to it, FI Care-pronounced “figh care”), mothers and fathers of preemies are treated as their kids’ case managers. They fill out charts, participate in rounds and develop care plans in conjunction with doctors and nurses. Mount Sinai piloted the project in 2011 and introduced it as their standard of care in 2013. They haven’t looked back.
“It becomes a full-time job,” says Kelly. “But the days fly by. My role with Charlie has evolved depending on where he’s at.” At first, she and Jim learned how to do “hand hugs,” cupping their palms around Charlie’s wee rump and head. “We weren’t actually able to hold him until his umbilical line came out, which was about six days after his birth,” she says. Now they’re able to cradle him, skin to skin.
This approach helps stressed-out moms and dads in very uncertain situations feel as though they have some control over their circumstances. More important, FIC leads to hugely positive results for the babies themselves: they’re discharged from the NICU sooner than their non-FIC counterparts, they gain weight 25 per cent faster, and 82 per cent of them (compared to only 46 per cent of non-FIC preemies) are successfully breastfeeding by the time they leave the hospital.
Before Kelly delivered Charlie, doctors tried to prepare her for the worst. “I remember a doctor telling us, ‘We’re just going to say this once, but there is the risk of fetal death.'”(While survival outside the womb is possible as early as 22 weeks, it’s not likely.) When Charlie arrived, squirming and mewling, after a 15-hour labour, Kelly and Jim were relieved to meet their “tiny, red, wrinkly, alien-like dude.” Many hurdles lay ahead: an ultrasound revealed some bleeding in Charlie’s brain (which has since been resolved). He also battled infections, including necrotizing enterocolitis, a gut infection common among preemies, which required a transfer to SickKids Hospital. But he continued to put on weight, and as of mid-September, he no longer needed respiratory support.
“Sometimes, you’re in a big hospital unit and you feel like you’re in the way or you don’t want to be a bother. I no longer feel like that-I feel like I have a role. This program is amazingly empowering,” says Kelly.
Family Integrated Care was developed by Mount Sinai’s pediatrician-in-chief, Shoo Lee, who’s also the former head of the division of neonatology at the University of Toronto. “We thought only trained professionals could look after patients,” says Lee. “Over the years, we’ve removed the families from the care of not only babies but patients, period. That was a mistake.” Lee was motivated to find a new approach, he says, after speaking with parents of children who’d been through the NICU. “Families told me they felt helpless and useless, because they come in and feel as though they’re not part of the team. They just sit there and watch the babies.”
In developing countries, he notes, parents are involved in their children’s care out of necessity-there’s a lack of nurses and resources. But to establish an effective precedent, he needed to find a system in a country with a social structure more applicable
to Canada. As it turns out, Estonia has been working with a model similar to FIC since 1979-enlisting moms and dads as caregivers helped compensate for the resource shortages at the time.
In 2010, Lee spearheaded a research trip to Estonia with other doctors, nurses, social workers and parents. A year later, after a series of proposals and approvals, the pilot study was up and running in Toronto. He’s now leading a trial under way in 10 NICUs in Australia and New Zealand, and in 20 across Canada, including Sunnybrook Hospital in Toronto, Victoria General Hospital in British Columbia and Kingston General Hospital in Ontario. If the study is successful, FIC will very likely become the standard of care for all preemies in this country.
Jack Hourigan was the first mom to sign up for the pilot at Mount Sinai. She was 27 weeks and five days pregnant when her daughter, “Tenacious” Tess, was born in 2011, weighing two pounds, five ounces. Her first experience of the NICU, she says, was terrifying. “I felt like an extra in Charlie and the Chocolate Factory. There were all these lights, sounds, smells and colours around us. The first week was really horrific: Tess had a lot of struggles, and I didn’t understand anything. I felt completely powerless.”
When the research coordinator presented Hourigan with the idea of FIC, it “finally made sense,” she says. “More skin-to-skin time, more education sessions, more hands-on care. It gave me structure and purpose, and that’s exactly what I needed.”
The FIC model doesn’t work for everyone. Kate Robson, the NICU parent coordinator at Sunnybrook and a mom of two preemies herself, notes that the program isn’t able to address all the barriers that keep parents away from the hospital. “If you have other children, if you are very sick yourself, if you are poor or if you live far away, it’s very hard for you to be as involved in your baby’s care as you might want to be.” Her hope is that, as FIC demonstrates the positive effects of parental presence on babies’ health, “we can make our systems kinder to families with hospitalized infants.”
Lee would love to see this model of care in place for parents of all sick children, not just parents of preemies. One challenge is convincing the government to make more accommodations for families facing extended hospital stays, he says. “Parking should be free and so should child care for the other children. These are things we have to do, because it’s good for society.”
Several days shy of Charlie’s original September 20 due date, he was transferred to a third hospital, closer to Kelly and Jim’s house, and fed from a bottle for the first time. Charlie is now at home. He’s making steady eye contact and has “discovered his voice,” says Kelly, laughing. She and Jim feel their NICU experience transformed their approach to parenthood.
“I don’t think the smaller things some parents might freak out about are going to bother us as much as they would have if Charlie had been full term,” says Jim. Changing diapers? A breeze when you don’t have to navigate a tangle of tubing. Even screaming tantrums are music to their ears. “When he fusses and cries?” says Kelly. “We love it! We love that he has the lung capacity now to do that.”
© 2014, By Sarah Liss. Today’s Parent (November 2014) todaysparent.com